The Uveitis and Ocular Inflammatory Disease (OID) and Uveitis Support Group is a patient education and support resource founded in 1996 by Frances Foster MS, NP, the late John Hurley, LISWC, and through the support of Dr. C. Stephen Foster due to a need by many patients to connect with others with our rare disease.
Our mission is to educate patients, their family members, loved ones, and friends, and the medical community about ocular inflammatory disease and to facilitate the exchange of information and emotional support between members.
Destructive inflammatory diseases of the eye such as uveitis are the third leading cause of preventable blindness in developed countries. We are deeply committed to raising awareness of the causes and effective treatment of uveitis and other ocular inflammatory diseases to prevent blindness in a treatable disease. Anyone living with uveitis or other form of ocular inflammatory disease is welcome to join us, along with your family members, friends, and others. We are a Self Help Group. As a self help group, we share our stories or experiences with our ocular inflammatory disease to help each other cope better and live better with a chronic eye inflammatory condition. There is no membership charge, ever, for participation in our programs or resources. Support Group expenses are underwritten by voluntary, tax deductible contributions to the Foundation. Donations or participation in fundraisers are always welcome.
We are indebted to C. Stephen Foster, M.D., for his encouragement, support, and unbelievable personal commitment to our mission and activities. None of this would have been possible without Dr. Foster’s energy and passion to communicate and reach out to patients everywhere who live with ocular inflammatory disease, and to the physicians who care for them.
The OID and Uveitis Support Group maintains a web page specifically for kids/family, teachers, and parents. We also have an online support group page for teens, parents, and adults that are accessible through Facebook to anyone living with ocular inflammatory disease. In addition to these online resources, we hold monthly support group meetings using a virtual platform with zoom along with other events. Please see the calendar for upcoming support groups via zoom. All we ask is that you follow the ground rules for each support platform.
Thinking about joining our online self-help support groups. We now have Facebook groups. These free online self-help support groups allow for sharing information, experiences, and support. Frances Foster MS, NP and Mike Bartolatz are the facilitators for our online groups. In addition to this website, the goal of our online self-help support groups is to help you and/or your family cope better with your eye inflammatory disease. As well as teach you and others about your uveitis and the importance of getting appropriate care. We have a group for adults and family members, parents and teens.
Click on a link to join a Group:
Facebook Support Groups – These are closed groups, meaning you must be approved by an administrator to join the group and content will not show up in a public newsfeed. Medical advice is not to be given, this a forum for support.
Adult Support Group for Uveitis/Ocular Inflammatory Disease Facebook Page – A support group for adults with uveitis and ocular inflammatory disease (scleritis, ocular cicatricial pemphigoid, birdshot retinochoiroidopathy, etc). CLICK HERE
Uveitis Parent Support Group Facebook Page– A support group for parents of children with uveitis: CLICK HERE
Teen Support Group Facebook Page – A support group for teens with uveitis and moderated by OIUF staff and young adults with uveitis: CLICK HERE
Read and learn more in this section with selected online question and answers with Dr. C. Stephen Foster
Hi,
Although I was diagnosed with Pars Planitis a long time ago, I have not have any flare-ups since they first got it under control about 15 years ago, (that is until a couple of weeks ago.) I have been researching a lot in the past 2 weeks and have learned a lot, plus have tons of questions about my disease and treatment. Back then, I didn’t know that doctors should look for the “root” of the disease. I am assuming that since I don’t have anything like MS., etc. that mine is auto-immune related.
I see the optho that originally treated me on Monday and I am going to ask a lot of questions. Since I was only 16 at the time, I can’t remember him ever discussing pressures and severity of the inflammation. I do know that it must have been very bad because I had very limited vision when I was diagnosed, but I must have responded to the steroids well. I took oral prednisone (60 mg day), drops and injections. My lingering problems have been floaters and poor night vision, but they have gotten worse about 2 weeks ago, along with increasing blurriness.
I am going to be well-armed with information and a list of questions on Monday for the optho. I feel like I was just diagnosed, instead of years ago, because of all that I have learned recently. I think that anyone that has become inflammation-free should be seen by an optho every couple of years, even without having any symptoms. My optho didn’t recommend it after the first yearly check-up and looking back I don’t think that was a good idea. I haven’t seem him for 14 (??) years, just my optometrist.
Missy
HLA-B27-associated uveitis occurs, we think, as a result of some germ or other triggering an autoimmune response. Certain germs have proteins that “look” like part of the HLA-B 27 protein that is present on the surface of the cells of the body in patients who inherit the HLA-B27 gene. And if such a person has the bad luck to come into contact with one of those certain germs at some point in life, the person’s immune system will, of course, attack and kill the germ; but it may also then inappropriately begin to “see” part of the HLA-B27 protein as also being foreign or germ-like, and attack it too, producing damage to the patient’s own cells. This then must be treated, calmed down, with steroids, and if it keeps coming back again and again, other medications may be needed as well.
Wishing you all the very best,
Sincerely,
C. Stephen Foster, M.D.
Hello my name is Holly,
My biggest problem is that this [iritis flares] has been happening with my eyes a week before my period for over four years. Both flare-ups happened at that same familiar time. I have had all the blood tests twice now nothing conclusive. Also a colonoscopie because my grandmother had crones. I am 38 and a mother of four I don’t spend much time on myself I don’t have it. Though I have had to slow down. I am just starting to realize how serious this is. I feel like a sitting Duck.
Holly
Two things: 1. First, there can be a relationship between flare-ups and menstrual cycle/hormone level ratios. You can determine whether or not this is probably the case with you by charting basal body temperatures and keeping track of flare-ups on the basal body temperature chart; you will find basal body temperature kits in any pharmacy; it is a real pain to do it for, say 4-6 months, but if you are willing to invest the time and effort into that, you can then take the charts to your gynecologist, who could then order the appropriate blood test for hormone levels at specific times of the month, find out what imbalances you might have, and then prescribe hormonal therapy for you to properly balance the relative amounts of the various hormones in an effort to see if that would stop you from having the flare-ups.
Sincerely Yours,
C. Stephen Foster, M.D.
Had a question.
My father has psoriasis (don’t know if that is spelled right) where his immune system is attacking his skin. I was told that this is an immune disease similar to my pars planitis except that it is attacking his skin instead of the eye. So I was wondering if there could be some connection between the two???
Denny
There is a very important connection between psoriasis and uveitis. Pars planitis is a form of uveitis. We sometimes find that a patient with uveitis of “unknown cause” in fact has psoriasis and does not know it; it can be subtle, with very few and small areas of itchy, scaly skin…not the obvious, large areas we tend to think of when we think of psoriasis. And so there is that connection, and you might think about whether or not there is any possibility that you have mild psoriasis and simply did not know it.
Then there is the other connection with positive family history. Some children develop arthritis in childhood, so-called Juvenile Rheumatoid Arthritis. And some of these children are at risk of developing uveitis. It turns out that the strongest factors that are related to the risk of the child developing uveitis include being female, making an autoantibody called antinuclear antibody, being less than 4 years of age when the arthritis begins, and…(get this) having a parent who has psoriasis.
So it appears that there is some genetic factor related to having psoriasis that can be passed on to offspring which may confer onto that offspring a risk for developing uveitis at some point in life. Whether or not any of this is the case with you, I have no way of knowing. But you asked the question about psoriasis and uveitis connections, so there it is. I hope this is helpful or at least interesting to you. With
Sincerest Best Wishes,
C. Stephen Foster, M.D.
Click and read . . .
Dear Dr. Foster,
A couple of weeks ago, after losing ground with my eye problems all through the month of February, a tooth that has bothered me on and off for the past couple of years started to really ache. So, I went to the dentist, who x-rayed and found an abscess by the root, and sent me home with a prescription for a week’s worth of oral penicillin. This past Thursday, we took out the tooth, and it was quite an easy yank. The next day, I had surprisingly little pain, though there’s still a sore spot when I push my finger into my cheek over the root, which may hopefully go away in a few days or so. We’ll see.
The odd sensations in my eyes seem to be diminishing. So, that’s the good news. One question for medical history buffs: While I was flaring over the last 6 months of last year, I got more relief from boric acid than pred forte, which had stopped working altogether pretty early in the game. My father used boric acid in the autumn as an eye wash for his many allergies. Boric acid in homeopathic potency still helps me sleep at night. I’m wondering: Do ophthalmologists ever use boric acid for eye problems anymore?
Best wishes to all,
Ken
Not much. It’s O.K. as a soothing collyrium/eye wash, but it has no significant medicinal properties for internal problems, i.e. inside the eyeball, like for uveitis; it simply does not penetrate through into the anterior chamber.
But your story does highlight an old, historical relationship that still is valid but which so many “modern” ophthalmologists have forgotten or have never learned: a focus of infection may cause uveitis or may at the very least aggravate uveitis, i.e. make it more difficult to control, make it flare up more, etc. This was well recognized in the first half of the 20th century. Chronic sinus infection, bad (chronically infected teeth/gums), infected ingrown toenail, etc can all do this, and taking care of the focus of infection can make the uveitis go away or at least make it much, much easier to control.
Sincerely,
C. Stephen Foster, M.D.
Dr. Foster,
I joined your group a few days ago, and have been reading the items that have been posted. I just turned 36, and was diagnosed with uveitis when I was 18. I will begin with where I am as of today. I am now legally blind. I have lost almost all of my central field of vision in my left eye, and, and going quickly in my right eye due to cataracts from steroid use. As of right now, I have been sent home to go blind. I have been to more specialist than I can count, and have never been able to find one that has the knowledge to treat my disease. (I have anterior, if that makes a difference)
The last specialist that I went to see suggested that I have a t-cell harvest, and do a total immune kill with some type of mustard gas medicine, and then to the t-cell transplant. With the side affects, I opted to not do this. (please advise me if I was wrong) I was previously on methotrexate for appx. 2-3 yrs, with no major response, this was in conjunction with 75 mg. of oral steroids. My body was beginning to show the signs of the steroid abuse with the veins breaking etc.
At that point, all attempts to control the disease were stopped. I was basically sent home to let the disease take its course. It is taking it course rather quickly now. I know that I have inflammation to this date, which is going untreated, at the recommendation of the last specialist that I had been to. I have never been placed on anything other than the Meth., now I am understanding through your site that there are several other things that are available.
I am quite sure that there are many things that I am leaving out, but my story is so lengthy, and I am sure that you have heard it all before. I am in Indiana, and am willing to travel if need be to find someone that has knowledge of this manner of disease.
Maggie
All the others who have responded to you already have emphasized this, it is very clear that you need the help of those who deal with difficult uveitis cases day in and day out (link to list of uveitis specialists). Unfortunately, it appears that you must be prepared to travel to get the help of such a person. But do it you must; and the consultant whom you choose will undoubtedly want to see you again, too. But he or she will also want to work with an ophthalmologist and perhaps a second specialist (e.g., a rheumatologist or a hematologist) in an effort to give to you the care that you need to preserve the vision you have, and hopefully to get back at least a little of what you have lost.
This will be a very long journey, Maggie, lasting several years. But it is a journey that is very much worth the effort that it takes. Consider it an investment in your future, and in the future of your family.
Sincerely Yours,
C. Stephen Foster, M.D.
Hi!
I have heard a lot of people talk about floaters. I am not sure what they are. Do you only get them from a flare up or are they some sort of scar tissue? I think I might have had a couple but they are not always there. Sound familiar?
Thanks for letting me know,
Holly
Floaters are collections of material (especially white blood cells) in the vitreous. New floaters are an indication, I believe, to get checked, since they may be indicators of recurrence of inflammation, or of retinal detachment beginning. Old floaters that drift in and out of the field of vision are just that: old, fixed, pretty permanent material that is trapped in the vitreous gel. They are distracting and aggravating, but typically are known by the patient to be the same old floaters that have been there for a long time.
Hope this helps,
C. Stephen Foster, M.D.
I am a new member. My 10 yr. old son was diagnosed 3 1/2 years ago with pars planitis. His vision fluctuates between 20/100 and 20/200. We have done 2 short courses of oral steroids, but have not done anything for 1 1/2 years. Our local doctor wants to do some injections but we were not ready for that with local anesthesia only. Has anyone had experience with these type injections for children?
Thank you.
Kelli
It is clear that your son is in very serious trouble; vision loss to the level you describe is, to me, VERY alarming, especially for a 10 year old. I suggest you move along, rapidly, with your doctor’s advice. You son needs treatment which will abolish the inflammation and get better vision back as soon as possible; the longer macular edema or other vision-robbing complication of pars planitis exists, the lower are the chances that it will be successfully reversed. Move along.
The idea of steroid injection is perfect, in my view, especially if your son has had no problem with elevated pressure in the eye while using steroid eye drops and oral steroids. This will probably have to be done with very brief general anesthesia; it is unlikely that a 10 year old boy will tolerate one or bilateral injections awake. I would remind you, since you have probably already taken Mike’s advice and read material at https://uveitis.org about pars planitis, that steroids may not be the definitive solution, and that continuing, open-ended use of steroid will create as much mischief as the pars planitis itself: cataract, possible glaucoma.
And so please pay very careful attention to the advice about moving on to oral non-steroidal anti-inflammatory agents, cryopexy, immunomodulation, vitrectomy, as needed for accomplishing the real goal: no inflammation, ever, on no steroids.
All the best,
C. Stephen Foster, M.D.
Dr. Foster
I haven’t posted in awhile but read everyday. It is great to see all the new members and all the people this website is helping. I really appreciate everyone’s input. I have my [glaucoma] surgery on Thursday the 29th, not looking forward to it, but it is what I need to do.
My main question was on the Diamox I am on. I know of few of you mentioned you were on it or had been in the past. I am on 500 mg. a day and can’t wait to get off of it!! I wake up every night with such bad “needles” in my feet, I have to walk around and rub them until it goes away, I am so tired all the time, not hungry, and this last week I wake up and I feel like I have been hit by a truck. My muscles, joints everything aches. Like I have been working out for hours the night before.
I called my doc and he said that is the Diamox and the sooner we can get me off of it the better. Did anyone else have this? If it wasn’t what is keeping my IOP down, I would go off of it quick!!!
Thanks again,
Melissa
Yes, it is true that this is a common side effect of Diamox (acetazolamide). Some of the things that you describe can be indicative of potassium deficiency, and Diamox can cause potassium loss. You may want to consider getting your blood potassium checked, so that your doctor can prescribe supplemental potassium for you if it is indicated.
Sincerely,
C. Stephen Foster, M.D.
My mom wanted me to ask the members here what the range should be for her eyes. She said that they told her the left eye was 17 and the right eye was 18.
Dr. T questioned why she was on Lotemax from her previous doctor. He said that is for pressure and he didn’t act like her pressure was high enough to be on Lotemax. What does everybody else think? I know there was a posting on the ranges a while back, but I can’t find it.
Thanks in advance for all your help. My mom also says “THANKS”!
Happy Holidays to all of you!
Kerri (12/13/2000)
“Normal” eye pressure is anything between about 10mm Hg and 21mm Hg; there are exceptions to this general “rule”, but these are pretty good general guidelines.
Lotemax is a steroid drop used for treating inflammation; it does not “treat” pressure. But its propensity to provoke increased pressure in the eye is less than that of most other steroid eye drops, partly because it is less potent than most others. And so, if a patient with uveitis is having elevated pressure while on other steroid drops, the patient’s doctor may deal with that problem by stopping the more potent steroid drops and substituting Lotemax in their place, hoping to see inflammation remain in control, while at the same time getting rid of the pressure-producing effects of the more potent steroid. Sometimes this works and sometimes it doesn’t.
So in this way one could consider a switch to Lotemax “treatment for pressure”. But in truth Lotemax is not in itself a “treatment” for pressure, i.e. one would never prescribe Lotemax to treat high pressure in someone who just had glaucoma; there are other drops which reduce eye pressure and which are used for treating glaucoma.
Sincerely,
C. Stephen Foster, M.D.
Click and read . . .
I was talking to a guy at work this morning and he was saying something about a chemo treatment that is apparently less harmful to the body. I can’t remember the name of it, though. I know it starts with a P. Has anyone heard anything about it? Is it still in the trials or is it readily available? Has it yet been tested for patients like us?
Ramona
You may want to be careful and skeptical when it comes to rumor and anecdotal stories about this and that being “great” for uveitis, and rely heavily on the experience of individuals who take care of large numbers of patients with uveitis, and on published reports in peer-reviewed journals, of controlled clinical trials.
Bloodletting with leeches and blistering therapy with hot bottles and coins was in fashion for treating uveitis in the late 1800’s and early 1900’s. Great excitement occurred about cyclosporin in the early 1980’s, until it was realized that the doses being used were damaging the kidneys of every patient treated. And this is the same story with FK 506 or Prograf (tacrolimus). It is a transplant antirejection medication with mechanism of action identical to cyclosporin. It is not safer than cyclosporin. We have used it in many patients with uveitis; it works for some and not for others. One of the patient contributors to this site was a treatment failure with Prograf.
The essential point is this: One wants to achieve the goal of no active inflammation and no flare ups, while at the same time getting off all steroids. That goal can usually be achieved through the use of immunomodulatory agents of one sort or another. The choice of agent is best done by an individual who works with patients with uveitis every day, and so has the experience that comes with doing this sort of work, knowing when to move along to a different medication, what to look for in the way of side effects and how to counteract those, etc. It is as much art as science. The perfect medication does not exist, and the wish that someone out there has it is neurotic. It’s a pity, but the truth is that uveitis is a bad deal, and its treatment often must be long, tedious, and complex – no short cuts. We clearly have a very nice resource in Michael, who is willing to be proactive, chase things down for all of you, and help keep it all in perspective.
C. Stephen Foster, M.D.
Dr. Foster,
I’m glad I have found somewhere that people understand the disease I have! Well because I don’t fully understand it!
My name is Julie, I have had Iritis for 12 years since I was 13. The episodes of it were very infrequent (every 2 years or so) up until this past October, when the iritis would not go away until 3 months off medication, after that my eyesight hasn’t been good, I can’t read from the left.
I have just this week told I have pars planitis in the left eye and that’s why I haven’t been seeing well from it. I am taking drops, steroid and non steroid every 2 hours one then the other (every 4 hours each one) I am really hoping that my sight clears up on that side!
My doctor says I do not need glasses, he says they will not help me. I hope to get to know everyone soon and find out all I can about iritis and pars planitis.
Take Care,
Julie
Where are you? Who is your doctor? What is your current and past treatment? What is your current level of vision in each eye?
Please read all of the material on all of the pages of https://uveitis.org including the treatment algorithm we advocate for the care of patients with pars planitis.
With Sincerest Best Wishes,
C. Stephen Foster, M.D.
Does anyone here have optic neuritis and PP? Steph
Where are you? Who is your doctor? Please read all the material on pars planitis at https://uveitis.org. I REALLY dislike getting into this sort of thing over the internet rather then in person with a patient, because of the very high risk of contributing to anxiety rather than enlightenment. And therefore, I beg you to discuss these matters with your doctors…all of them.
However, since you have posted a very important question, I will answer, rather then sit in silence. Several (8 or 9) diagnosable systemic disorders can be associated with pars planitis. About 50% of patients with pars planitis never are discovered to have any associated disease. Of the disorders which can be associated with pars planitis, there are 3 which can also cause optic nerve problems, including optic neuritis. These disorders are multiple sclerosis, sarcoidosis, and cat scratch disease.
Now, having said that (and answered your question), I pray that you do not now go into a tizzy worrying about having one of these things, but rather will bring this to your doctors’ attentions and let them consider whether or not there is anything at all to suggest additional diagnostic studies.
Hoping that this reply will be more helpful than frightening,
C. Stephen Foster, M.D.
Click and Read:
I’m going over all the material I have about uveitis, in preparation or my visit to the uveitis specialist this week in Rio. I came across a NIH News Released dated May 27, 1997 “New Treatment for Eye Disease Reduces Need for Strong Drugs” It says that “…a purified protein, called retinal S-antigen, given orally to a small group of people with uveitis, allowed them to be weaned off standard treatment drugs, etc….”
Have you heard about this? Are there any developments? Maybe Dr. Foster knows more about it.
Thank you everyone, you’re a wonderful group!
Florandina
Yes, I know about it. The National Eye Institute asked me to help them successfully complete the trial, and therefore I am a co-author on the publication. The research results were published in the American Journal of Ophthalmology, and you will find the reference in the “PUBLICATIONS” section of the https://uveitis.org site.
As in so many other instances of prepublication investigator and media hype, so too in this instance the hope and the hype were greater than the actual results, which were, in my opinion, disappointing. One group of patients in the trial were more likely to be able to reduce chemotherapy than the other groups. But the results were not fabulous, and more important, the logistics were and are prohibitive: the material is made from cow eyes; the number of cow eyes required to make the material is enormous, and makes getting large amounts to do a proper trial, much less ongoing therapy, basically impossible; and then there is the concern about mad cow disease these days.
My advice: stick to the mainstream; stick with what is tried and proven, rather than to cling to the hope of some “new” treatment that will be “the answer”, while delaying proper care that you could be receiving now.
Sincerely,
C. Stephen Foster, M.D.
Thank you very much for your message on Retinal S-Antigen.
I, like most members of this group appreciate your work, not only as a knowledgeable professional, but as a generous human being who shares some of his spare-time with us who live with this strange disease.
Sincerely,
Florandina
My son was diagnosed with pars planitis 3 years ago atage 7. His vision was 20/200 in both eyes at the time. The only treatment we have done is two short courses of oral prednisone. It improved his vision a little, but he has never tested above 20/100 in either eye. He does not have any systemic disease, as far as test have revealed. I too have wondered about homeopathy, but do not want to do more damage than good.
Brian seems to flair the worst in the spring when seasonal allergies kick in, although his allergies aren’t bad enough for prescription drugs. We were told drops would not be effective for intermediate uveitis. I don’t think we have ever controlled the macular edema and that is my greatest concern.
We live in AR and he was diagnosed at Vanderbilt in Nashville.
Kelli
10 year old boy with chronic pars planitis, for 3 years at least, now with vision of 20/100 in each eye, treated only with steroids. Is that about it? Do I understand the essence of it correctly?
Please review all the material at https://uveitis.org. Please interact with Mike from support group in order to better understand where your little boy is headed. Mike had pars planitis; he was treated only with steroids. I urge you to interact with him and others on this site with pars planitis in an effort to get a clear sense of where you and your child are headed.
The disease is so sneaky, so insidious, so slowly pernicious, that patient, parents, and doctor alike are often sucked along down the pipe until it’s too late … permanent damage that then robs the patient of ever having normal vision ever again.
And it doesn’t have to be that way. You’re going to have to travel to see an expert in uveitis. Consider it an investment in your child’s future.
But I must tell you, I am VERY concerned by what you have written to us about your son, and fear greatly for him if you and he remain on the path you are currently traveling.
Sincerely Yours,
C. Stephen Foster, M.D.
OK. I have read all the info on pars planitis (p/p) and iritis in Dr Foster’s website. I still don’t feel like I have a clear concept of the steroid issue.
I was told by my doctor that p/p will always be inflamed, a tad or a lot and he will treat accordingly, I go back on Thursday and I want to have all my questions for him ready….. By using the aggressive treatment Dr. Foster outlined, result (usually) in NO inflammation?
Can I expect No inflammation?? If these meds are used is that the usual outcome? If I continue on the path I am on now, both steroid and non-steroid drops, will I ever achieve NO inflammation?Just gimme the best guess guys!
Thanks,
Julie (3/27/2001)
Let’s see if I can make it more clear than I have done on the web site https://uveitis.org.
I hope that taking the time to outline the FACTS and my OPINIONS about pars planitis and its prognosis, based on published data in peer-reviewed journals, and comparison outcomes data, similarly published, in the way that I have here for you clarifies all remaining questions that you had about this insidious but cruel disease.
Sincerely Yours,
Stephen Foster, M.D.
My daughter was diagnosed with Uveitis, when she was 2 1/2. She is now 5 1/2. She is not yet at the point where she stays completely still for her eye exams, which are monthly. So far she has been under General Anesthesia, twice. Now the ophthalmologist wants to do it again. It has been every 6 months for the past 1 1/2 years. I want to find out if this is common, to be put under so often. I am nervous about this, and feel she is being used as an experiment. HELP!
Hope my wording is clear.
Unsigned
It sounds as if your daughter is under the care of someone who truly cares, and wants to be certain that he or she can adequately examine the eyes, dilate the pupils, look for cataract, examine the retina, check the pressure, etc. And examinations under anesthesia are common for delivering proper care to children who cannot adequately cooperate. Sometimes that examinations after corneal transplantation occur every 2 weeks for a while.
However, I would emphasize the following two points:
The doctor will not be able to judge whether or not there are inflammatory cells in the anterior chamber when your child is under general anesthesia, examining her through the operating microscope or with the indirect ophthalmoscope; only a slit lamp can enable him or her to do that, and it is unlikely that he or she has such a slit lamp available in the operating room, equipped to be used on a patient who is lying down. Therefore, it is very important for this reason too, not just the avoidance of multiple anesthesias, to get your little girl accustomed to cooperating with the office examination.
Sincerely Yours,
C. Stephen Foster, M.D.
Hello, my name is Pam and I’ve suffered off and on with uveitis since ’89. My old ophthalmologist never caught it during my high school and college days, although early-onset glaucoma runs in my family. My take is that he either never caught it OR never bothered to tell me. I’ve had the usual symptoms: photophobia, pain, throbbing, redness, blurry vision, loss of acuity. I finally got a new doctor in ’92 and I haven’t a serious episode since. He put me on Prednisone and atropine, then on Flarex. The latter was far more effective than the others, with fewer side effects. Right now eyes are OK but I’ve lost visual acuity, esp. in the left eye. My doctor has done all the usual underlying causes. Lupus, rheumatoid arthritis, sickle cell, sarcoidosis, diabetes, lymphoma. Everything keeps coming back clean. I haven’t had MS screening, perhaps because I don’t WANT to test positive for MS.
But let me throw this at you. Tell me what you think. My attacks flare up during the late winter and early spring, and then late summer. I seldom have uveitis flare ups in winter or late fall. Could changes in light, air pressure, humidity, air temperature, be factors that trigger the symptoms? So far, the photophobia’s been the most bothersome. I’m back on Flarex for the next ten days until the symptoms cease. BTW, my pupils have shrunk to the size of pin dots…They’ve always been smaller than usual, but now they’re really tiny, even in a darkened room. I have them dilated occasionally but I really don’t want to depend on drops and steroids (which I really don’t want to take because of side effects). I’ve been looking into alternative therapies. What about bilberry supplements? I know it’s effective for improving night vision but how is bilberry with other eye ailments?
Thanks for having me in your group. Sorry for lurking for so long. 🙂
Pam (4/6/2001)
Surly if you have been “lurking” you must know by now that most of us here would be EXTREMELY concerned about you. Bilberry? Already lost vision? Pupils the size of pinpoints?
Where are you? Perhaps we can direct you to an ocular immunologist who devotes his or her life to caring for patients with uveitis, so that you can be properly educated about where you currently stand with respect to vision loss, how likely that is to be permanent, how likely it is that you will, over the next 10 years, lose more on your current approach to your problem, what sensible, realistic alternatives might exist, etc.
I must say, I find it extremely discouraging and troublesome and of great concern to read of someone who has had chronic uveitis, has lost some vision, has damage in the form of adhesions that stick the pupil down to the size of a pin point, and herbal treatment is the approach that is being contemplated.
I wish you the very, very best going forward, and stand ready, if asked, to direct you to an expert on these matters nearest you.
Sincerely Yours,
C. Stephen Foster, M.D.
Hi everyone,
Once pupils are adhered and dilating is not helping,what can be done? Is the damage permanent?
Thanks, Joyce
Yes, it’s permanent, unless or until surgery is necessary, for cataract, for example. Then the adhesions are physically broken during the surgery.
Sincerely,
C. Stephen Foster, M.D.
I am usually very able to deal with nausea. This was different, I was violently ill to the point that I was scared to move. Yes, I was vomiting, I could not even keep water down. I have not experienced anything like this until now… And was frankly quite alarmed. Luckily, I had an appointment with the rheumatologist during this time, and with the help of my mother and some strategically placed trash cans was able to make it to the appointment!
I think my rheumy wants to see if this comes back. Perhaps it was a one-of experience, and I will not have it again. If I have it next week, I will definitely be in contact with his office. I was prescribed Phenergan for the nausea. It knocked me out like nothing I have ever experienced. I fell into a deep sleep in class, and came home and slept for four more hours. Trading in one problem for another, it seems.
Thanks for all the advice and sharing your personal experiences. I AM pretty scared. I just feel like I am completely out of control of my life at times, and it is quite rough for me. I know others experience this, and are in much more serious situations medically, so I try not to bring this up, and have been struggling with it on my own.
I will get through this!
Kristin
The remarks that Liz has been making to you in an effort to help you are ALL accurate and appropriate, with one exception: leukovorin is an appropriate alternative to folic acid with respect to protectionagainst methotrexate liver toxicity. If it is given correctly, it does not detract from the therapeutic effectiveness of the methotrexate. On the matter of the nausea, I would make the following remarks:
We NEVER tolerate a patient being miserable. This is not cancer chemotherapy, where one must endure considerable misery in order to survive the cancer. Mild stuff….sure. But major life-altering side effects are never tolerated; we simply move along to another agent.
We occasionally encounter a patient who tolerates nothing; everything nauseates him or her, or makes the patient feel “weird” or profoundly fatigued or something else. It has been impossible to explain this scientifically or objectively. Regrettably, such patients seem doomed to years of steroid use and slow but permanent loss of vision from damage to the eyes caused either by chronic low grade inflammation or by chronic steroid use. I pray that you are not one of these individuals.
With Sincerest Best Wishes in finding the way,
C. Stephen Foster, M.D.
Thank you for your explanation. I have found ways to deal with the fatigue, and as long as the nausea does not become a 3-day event I will tolerate it too. The period of intense nausea/vomiting only lasted for about 6 hours. Definitely tolerable, especially if I can figure out when it happens and take anti-nausea medication.
I, too, hope I am not one of the unlucky few!!!
Thanks again,
Kristin
I understand that Dr. Foster’s philosophy is anti-steroids, but just what are the options when methotrexate doesn’t work for you?
I’m really curious because my bad eye has finally (knock on wood) calmed down after 6 years (but I already have a cataract there) … and now my right eye is getting in on to the act. I just had a flare die down, but had to get a kenalog injection for a CME …. UGH!!!
I could live with one bad eye if I had to …. but I can’t stand the thought of BOTH of them crapping out. I was on mtx for 6 months, but then had to stop because my liver didn’t respond well.
So … what else is there? And who’s the best doc to see for this in the Hartford, CT area?
Thanks, Carol
No, sorry, but you don’t quite have it right. Dr. Foster is NOT anti-steroid. In fact, I teach a stepladder algorithmic approach in aggressiveness to therapy, with steroids always the first step on the stepladder. Once one reaches the immunomodulatory step, there are many, many options. Methotrexate is often the first recommended, simply because of its length and safety track record. But not everyone responds, not does everyone tolerate methotrexate. One tries and moves along as needed, until one finds the medication or the combination recipe of medications that accomplishes the goal: total freedom from all recurrences of uveitis, and freedom from significant side effects from medication.
I know of no one in your area who has done a fellowship in uveitis and who, therefore, is trained specifically in the sub specialty.
Sincerely Yours,
C. Stephen Foster, M.D.
I have Lupus with severe Sjogren’s occular involvement. Thanks for the welcome Mike, I’ve been a little slow at getting to my e-mail. I’ve had such severe photophobia the past few weeks that I’ve only be able to spend a short time at the computer each day, can’t watch t.v. (small loss), nor open the blinds. Unlike most people in the group I don’t think I have uveitis, I have Lupus with severe Sjogren’s ocular involvement. My eyesight went from 20/20 uncorrected about two years ago to 20/200 left eye corrected and 20/140 right. Friday I couldn’t take any more pain and made an emergency appointment, more ulceration and scarring, I’m going to be having a bilateral partial tarsorrhaphy this week, and I’m really frightened, but I have all tear ducts plugged, use drops every 15 mins. and wear moisture chamber goggles at night and during sometimes during the day. I was hoping the doctor would think a graft or cornea transplant would help, but he said I would reject both, and it could make my lupus flair to a life threatening level.
I hate to start posting to a new group on such a negative note, but that’s how it goes. Has anyone in this group been through this surgery, I can’t seem to find anything about it. I’m 46, live outside of Philly, and currently going through visual rehab training, my career testing said I should go into teaching, but can you think of what a bunch of kids would think of a teacher who’s almost blind, like they went to heaven. So as soon as I recuperate it’s back to the career drawing board.
Mary
I do not know enough about you to reply appropriately here, and probably couldn’t without personally seeing you any way. But in general I can make the following remarks that you may or may not find helpful. Sjogren’s syndrome, associated or not with a diagnosable “connective tissue disorder”, such as rheumatoid arthritis, runs the severity scale from mild to catastrophic. With mild Sjogren’s one has dry eye and dry mouth that are bothersome but not vision threatening; these are typically treated with warm compresses of the eye lids, with gentle massage, and with artificial tears and room humidification and intake of lots of liquids. More severe “sicca syndrome” is treated with artificial saliva for the mouth, secretory stimulation with Sialagen, and occlusion of the lacrimal puncti to conserve fluid, i.e. to slow down its loss from the surface of the eye.
Wearing swimming goggles or performing a tarsorrhaphy are reserved for more severe cases in which the cornea is being severely damaged, all in an effort to reduce the surface area of the eye exposed to the atmosphere, thereby reducing evaporation from the surface, and thereby keeping the surface wetter. There is an inflammatory component to the disease. We sometimes find that certain “immunological markers” in the blood, i.e. indicators of a person’s immune system activity, are elevated in patients with active Sjogren’s syndrome, and in those instances I treat the patient systemically with medication designed to calm down the inappropriately hyperactive immune system. In some instances all that has been requires has been a short course of systemic steroid (prednisone), with subsequent tapering and discontinuation of the medication; I have had to re-treat in that way in some instances. But these have been SHORT courses of steroid, i.e. less than a month. The findings that inflammation is involved in this disease has led to the development cyclosporin for topical application to the eyes of patients with Sjogren’s syndrome mand now others have come along.
Regarding corneal transplantation, your doctor has told you correctly. Unless your underlying problem can be sufficiently corrected, any new cornea put into your eye would be rapidly damaged by the same process which has damaged your own (apparently) cornea. However, if the problem were to be brought under control, then corneal transplantation would not be out of the question.
Perhaps this is more than you wanted in way of a response, but in the absence of personally evaluating you I had no way to know just which of all the above categories you might fall into, and so wanted to provide information to you as best I could.
With Sincerest Best Wishes,
C. Stephen Foster, M.D.
Dear Kristin:
Remember that Dr. Foster is the physician who put Demi on both the NSAID and the MTX. I spoke at length w/the ped. rheum. at Childrens of Phila. and my own triple boarded rheum. about this . This is NOT my opinion. According to the PDR many antibiotics (amoxicillin) can cause the same problems as NSAIDS taken w/ MTX however again the physicians I have talked to say that clinically the problems do not arise unless there is impaired renal excretion.
Glen
I’ve been catching up on posts, since being in absenteism for a couple of weeks. I can’t say that I completely agree. Since hearing more and more about MTX and all the various protocols that some on this site have undergone, I’ve spent a lot of time in the library/bookstore to look up as much as possible about MTX.
I thoroughly read all the sitations. HERE’S what I’ve read: It is NOT recommended to take NSAID’s, aspirin etc. because these compounds displace mtx from its binding site on Albumin. This increases the mtx blood concentration, > toxicity occurs at 10 ^-8 molar. The problem enlies in that MTX, on it’s own tends to accumulate in fluid compartments (pleural/ peritoneal) in the body out of which it diffuses slowly. If there’s more MTX in the blood, there’s more probability that it will become “lodged” into an extracelllular compartment, and by diffusing out slowly, prolong it’s own action and cause unnecessary harm.
That said…. it makes sense why physicians when faced with patients that have an incredible inflammatory process coupled with severe pain (joint, ciliary etc), would chose to put a patient on both MTX and an NSAID. Now, obviously, I’m not a physician, nor do I have first hand experience with a case like that. However, in my mind, Kristin has a valid point which is backed up in the literature.
Hope you’re doing well! I’m still working on catching up on posts… 1000 more to go!
Anya
May I suggest that we leave the driving of the bus to the physician in charge of the individual patient? This is an example in which experience trumps rigid guidelines. It is true that methotrexate and nonsteroidal anti-inflammatory medications interact in important ways. However, experienced rheumatologists have used the two together for 40 years, learning how to do it safely, i.e. taking into consideration the drug interaction and prescribing (dosing) accordingly, learning that, sometimes for the good of the patient, combining the medications into their therapeutic “recipe” provided more therapeutic benefit at less risk to the patient than did pushing the dose, for example, of methotrexate.
This is a wonderful forum that accomplishes much good, in my opinion. But there are some matters in which one may get a little off track in the understandable effort to know more and to spread knowledge. The details of patient care and medical prescribing and monitoring is probably one of those “tricky” areas, and if you wish to pass such matters by me first before getting too far down the discussion path, I would be pleased to answer to the best of my ability.
Sincerely Yours,
C. Stephen Foster, M.D.
I have been at 12.5 mg per week for approximately four years. I’m also taking 10 mg of deltasone (orally) every other day. We have not been able to completely reduce the steroids – which I’ve been on for six years, but have gone from 180 mg per day to 10 every other. Great news for my eyes and the rest of my body! (Even greater news for my husband due to the nasty mood swings!)
Does anyone else on mtx have liver biopsies? I haven’t been able to read all of the posts – or keep up with the new ones – but I don’t believe I’ve read anything about that. My opth doctor (Dr. S) and my rheumy doctor (Dr. E) can’t find any data to support either having or not having them. So, as a precaution, I have a liver biopsy every other year. Wow – what a great site. I really wish I’d found it sooner. I have trouble keeping up!!
Shelley
Your dose of methotrexate is very low; some of our patients are on 25mg per week. An occasional one is on 30 or 40 or 50mg per week. We, and every rheumatologist I know gave up “routine” liver biopsies in methotrexate patients years ago. You may want to visit the Immunosupression workshop at https://ww.uveitis.org, and visit the web site of the American College of Rheumatology to look further into this matter.
But to make a long story short, I have been here at Harvard for 26 years, have used methotrexate for longer than that, and have not had any patient biopsied nor later regretted it in all that time. We simply follow, closely, the liver enzymes, and back off on the dose if the enzymes rise significantly, and stop the drug if the enzymes do not fall when we decrease the dose.
Other medication, such as cyclosporin, can work synergistically with methotrexate in patients who are not inflammation free off all steroid if they are “maxed out” on the methotrexate dosing. But for the individual who is not “maxed out”, we simply continue to push the dose until we have accomplished the goal: no inflammation on no steroid, or until we reach a dose that is not perfectly tolerated (side effects, rising enzymes, etc). Hope this helps.
Sincerely Yours,
C. Stephen Foster, M.D.
My 7 year old daughter is on cyclosporine, methotrexate and pred forte drops(2xday). She has Iritis in both eyes but is also being treated as if she has JRA. The cyclosporine was giving her nausea and diarrhea. After reading your message I also noticed she has alot of hair on her legs. I want to insist she is taken off the cyclosporine!! We see the rhematologist today. Our opthalmologist says the amount of drops she is on isn’t dangerous — but the rheumatologist disagrees! She’s had iritis for approx. 3 years! She’s been seen by Dr. Foster also. Hoping and praying she won’t need these drugs much longer.
Cheryl
Our philosophy can be summarized succinctly by its 3 essential elements:
1.Complete freedom from all inflammation at all times.
2.A limit to the total, cumulative amount of steroid used.
3.Freedom from any “important” drug-induced side effects.
Here’s why:
If your child has an important drug-induced side effect, then the drug should be reduced or stopped; there are plenty of immunomodulatory medications that one can choose from to accomplish the goals listed above. But one must also be thoughtful regarding whether or not the side effect is significant to change medication or tolerable for the bigger scheme of things, i.e. saving excellent vision for the next 70 years of the young patient’s life?
Hoping this helps. If you and your doctors need additional input from me regarding alternative medication, please let me know.
Sincerely Yours,
C. Stephen Foster, M.D.
Dear Dr. Foster,
Can you tell me anything about “cellophane” on the eye? Apparently my son has this. He also has a little bit of macular edema and mild inflammation in the left eye. He was given his third steroid injection yesterday. His vision is 20/30 in both eyes with +1 cells in left eye.
He was on cosopt for the last month due to pressure of 40 in the right eye. The pressure is back to normal. I think I read somewhere that the drops sometimes cause edema and it will go away when the drops are stopped. But even if this were true, he didn’t use the drops in that eye.
Can anything get rid of the cellephane?? And with all the weird problems my son has had, would you feel that this is something more than just pp? Have you seen cases of pp like this? Do they ever get better? I asked the doctor about taking Nsaids and she said they don’t work, period. What about cryoplexy – would that be an option?
Thanks for your concern,
Sandy
Cellophane maculopathy may occur as a consequence of chronic inflammation. Once formed it tends to be permanent. It worsens with continuing or recurrent inflammation. Steroid therapy may help by treating active inflammation, but, of course, sooner of later with chronic or repeated steroid treatment one pays a price with cataract or glaucoma or both. This is why we have preached a philosophy of elimination of inflammation and a limit to steroid use, BEFORE permanent damage is done to delicate structures critical for good vision. You may want to consider, if you have not already done so, spending considerable time at https://uveitis.org to learn more about your son’s problem and treatment options for it.
Sincerely,
C. Stephen Foster, M.D.
Also, has anyone heard of the use of bee venom for ocular inflammation?
Linda
Perhaps you can share with us the published evidence that bee venom is effective for anything. This is another of the regrettable areas of homeopathy and herbalism, in which controlled clinical trials are not done and in some cases are even resisted for fear of an outcome that indicates that the clinical claim has no basis, as was the case for one recent, well-designed trial comparing placebo with herb with claimed therapeutic effect.
I suggest one keep a skeptical mind on such claims, and demand evidence of efficacy, evidence from non-biased, sources with no financial interest in the outcome of the randomized, placebo-controlled, double-masked clinical trial.
Sincerely,
C. Stephen Foster, M.D.
Cyclosporin drops may or may not be helpful for one or another eye disorder; they are being developed by Allergan Pharmaceuticals for the treatment of dry eye. They are probably useful for certain forms of ocular allergy, and perhaps for a disorder known as ligneous conjunctivitis. We have been particularly disappointed in them in the care of patients with uveitis, corneal infiltrates, and corneal transplants.
Sincerely,
C. Stephen Foster, M. D.
Sure. As a matter of fact, most patients with rheumatoid arthritis do not have HLA-B 27 positivity. HLA-B27 is a gene that seems to predispose to the development, at some point in life, of any one or combination of the following:
Ankylosing spondylitis
Inflammatory bowel disease
Uveitis.
Sincerely,
C. Stephen Foster, M.D.
I’ve combed the information on this site – and as I have an iritis flare at the moment decided to speak to a specialist – I normally go to the ER. (I’m 41 and I’ve had bilateral iritis 2/3 times a year since I was 21 – no obvious cause. My iritis isn’t bad, cells 2 sometimes 3, I’m not a steroid reactor, my sight is good, pressures still normally OK. It’s sometimes difficult to taper down so the attacks can drag on and I’m aware that even when I don’t have a flare I often have inflammation in my eyes although not enough to show much on a slit lamp.)
I asked the specialist whether there was anything more I could do to try and stop the attacks with the aim of protecting my sight long term. His reply is that cataract and possibly other complications are inevitable eventually and he’s unwilling to start oral steroids because of side effects. He also said my iritis is probably stress related. Given that over the last 20 years nothing about my iritis has changed, I find it difficult to accept that stress could have been the answer throughout this whole period. I feel I lead a privileged and happy life.
From what I’ve read on your site it seems as though non steroidal forms of treatment may not be appropriate for relatively mild iritis like mine – sorry if this is wrong. I’d be grateful to know if you think I should accept the specialist’s view of the inevitable and carry on as I am – or should I be trying to argue for a different form of treatment when I see him again? I’m really sorry to bother you again but like everyone I long to find an effective treatment for this and find speaking to specialists completely daunting.
Thank you for your help.
I cannot for the life of me understand why the material on this site has not made it VERY clear to you that you would be the PERFECT candidate for nonsteroidal approaches to care and prevention of recurrent attacks of uveitis. What part of this is unclear? Please help me out here, because the whole point of posting all this information is to provide patient and physician education and to change the tired old ways of treating uveitis. I suggest you move along. Enough is enough.
Sincerely Yours,
C. Stephen Foster, M.D. (9/14/2001)
Following your earlier kind reply 21 year old diagnosed with uveitis/irits. Perscribed topical drops and predizone 25 days. after 4 days off pills-still on the drops four times a day . eyesight worsened. Steroid injection given right eye. drops continued. Tablets restarted for 1` month. What causes this Disease? any answers or help out there.
Mom
With about 70 different things that can cause uveitis, it is impossible to provide help to you with so little information. Rheumatoid arthritis, by the way (you mentioned that the patient is rheumatoid factor positive) is not a “cause” of uveitis in that the prevalence of uveitis in the rheumatoid arthritis population is not significantly different from the prevalence in the general population. In general, patients with stubborn uveitis are, in my VERY strong opinion, best served by consulting with an individual who is, by virtue of specific subspecialty training and experience, truly expert in the diagnosis and treatment of patients with uveitis.
Sincerely,
C. Stephen Foster M.D.
Dear Dr. Foster,
I was diagnosed with Pars Planitis in Feb.. Needless to say it was stubborn to treatment. After 6 injections of Kenolog from April to August it is finally quiet. Yea! 5 injections were inserted in the back of the eye and the last one was in the front of the eye. Now I was just diagnosed with glaucoma. Last Fri. my pressure was 35 and immediately put on Timoptic and on Mon. it went down to 20. I am only 31 and am very nervous of having 2 vision robbing diseases. After reading all your literature I’m gathering that the area of insertion is the key to reduce risk of intraocular elevation. Are you saying that the injection in the front just below the eyeball is the safest? And the subTenon’s route is in the back is not so safe? And if the inflammation becomes active again would you recommend your uveitic glaucoma pt.’s to continue to have steriod injections in the front of the eye or the implant drainage? Thank you so much for your help! I’ve learned so much from this web site. And it’s also nice to know that your not the only one with such a strange disease.
Lisa
Anterior injections can cause glaucoma too; less likely than posterior ones, but still can do it; steroid drops, for that matter, can cause glaucoma. In your situation it seems to me that one should be thinking hard on other, non-steroid techniques to stop your inflammation.
Sincerely Yours,
C. Stephen Foster, M.D. (10/3/2001)
My rheumatologist recommending using Methotrexate while the Uveitis doctor is suggesting that Cyclosporine is the way to go (less risk for young child)?
Regards,
Laura
Which of your doctors has the most experience treating children with immunomodulatory agents? Your question is not so easy and straightforward to answer, but perhaps the following remarks can help you a little: Methotrexate has, by far, the longest and best track record for both safety and effectiveness in treating children with inflammatory disease, both arthritis and uveitis. But it is not uniformly effective, i.e. not every child is a success with this medication. Additionally, not all uveitis specialists have experience using methotrexate, dependent upon where he or she trained; some centers become focused on one drug and trainees at such a center get experience then with only that drug. Cyclosporin also has a significant track record of effectiveness and safety, when used correctly; early experience with it indicated that it was spectacular, until it was realized that kidney damage was occurring in every patient being treated with it at the high dose initally used; at lower doses used today its effectiveness is less spectacular. It does produce one or two unavoidable side effects, unlike methotrexate, which carries with it, as do all the medications, the POTENTIAL for side effects. Cyclosporin stimulates hair growth, and some females in particular find that facial and arm hair growth is objectionable.
The bottom line, I think, is that ONE person should be in charge, and that person should feel free to prescribe the medication that he or she believes is in your child’s best interests. So…whichever one of your doctors is going to take on the responsibility of prescribing and monitoring for safety should make the decision, in consultation, of course, with you, after a dispassionate discussion of risks and benefits.
Hope this helps,
C. Stephen Foster, M.D. (10/5/2001)
Dear Dr. Foster,
My son has gone through his lens replacement and vitrectomy. He is doing well. He still does not have much sight out of the eye. They are hoping to move him to glasses and do some patching in about three weeks. Post surgery his pressure was 35 and is now down to 6. But… the inflammation is back. They put him on pred forte drops every half hour while he is awake for the last two days. We go in tomorrow to get things checked out. How on earth do you taper from such a high dosage?!?! How do we know when we should be seeking alternative immunomodulatory therapy? Our son is not even 6 yet. I realize that these white blood cells that have returned in the last few days may disappear with the inflammation but we will always have the fear in us that they will not (like the last time, and as such the reason for the vitrectomy).
What a vicious circle.
Ellie
Sorry, but I have forgotten, if I ever knew, the details of your son’s case. From the little that is contained in this message, it sounds as if he has had uveitis, bad enough to require lots of steroid therapy and to result in development of cataract, and that now he has gone through cataract surgery (?with a lens implant?) and is having a pretty rough time of it, with inflammation and a period of high pressure. Is that about it? And you’re wondering if now would be a good time to begin to consider immunomodulation?
The fact that he is “only 6 years old” is irrelevant with respect to the wisdom and appropriateness of immunomodulatory therapy; our best (most successful) patients are 3, 4, 5, 6 years old. It sounds to me as if such therapy should have been considered long ago. By reading the material on this site you will have learned or will learn that the past is a powerful teacher if one will allow it to be.
History tells us again and again of the foolishness and failures of the following:
Where are you? Who are the doctors involved in your child’s care? What is his medical program now? What is his level of vision?
Perhaps with more information of this sort we can help you get onto a path that leads to the best possible outcome for your child.
Sincerely Yours,
C. Stephen Foster, M.D.
Dear Dr. Foster:
I have been having recurring uveitis since January of this year. My opthalmologist treated me with Pred Forte to start with but the uveitis worsened. I was then put on oral steroids and the uveitis improved to the point where I was taken off of the steroids. 10 days after tapering off of the steroids my uveitis came back very severely. I started back on the Pred Forte and also the oral steroids (60 mg) again. I also was given a steroid eye injection as well. The inflammation improved and I tapered off of the oral steroids as well as the Pred Forte. I was clear from any inflammation for about 3 months. The uveitis came back again. My ophthalmologist has put me on just the Pred Forte for now (along with the dilated drops). My current uveitis flare up does not seem as severe as the previous one. My question is this. I have read your treatment options for HLA-B27 (This is what I have) and I wanted to know if you recommend any other type of treatment (i.e. oral non-steroidal anti-inflammatory drug or immunomodulatory therapy)?
Thanks,
Paula
Yes, of course. You have read my philosophy. If a person has multiple recurrences, as you clearly have, we move along to other strategies, rather than simply continue to play the same string on the guitar. Our next step typically is with daily use of an oral non-steroidal antiinflammatory agent in an effort to prevent yet another recurrence.
Best Wishes,
C. Stephen Foster, M.D. (01/17/2001)
Two questions. First, would an ALT level of 91 after starting MTX with 48 be reasonable cause to drop MTX? Second would continuing oral steriods after dropping MTX without any non-steriodal immunomodulators be a good idea?
Who is your chemotherapist? What has he or she advised you on this matter? I would certainly reduce the methotrexate dose in any patient of mine who showed a doubling of his ALT level on methotrexate; whether or not I stopped the drug altogether would depend upon the ALT behavior in response to the reduction in dose.
Other information on this site should indicate to you our negativity about chronic use of steroid, especially oral steroid.
C. Stephen Foster, M.D.
Dear Doctor Foster,
First, thank you for this excellent site. I’m a 54 yr old male with AS, otherwise good health, on 125mg/day indocin for 10 yrs with blood work OK. I had iritis flares every 1 to 3 yrs from ’89 to ’99 when it became chronic. It responded to Pred Forte. but came back every few months. 18 months ago, I began 2 drops/day (topical) 1% cyclosporin which seemed to work for a while. But now it’s back every few months. I’m willing to incur significant health risk if necessary to reduce risk or vision loss. Would you lean toward higher indocin dosage, another NSAID, going to methotrexate or something else?
I cannot comment specifically about you, since I do not practice over the internet. But in general, we advocate moving along on up the “stepladder” if one seems to get stuck being dependent on steroid or needing steroid again and again and again. Methotrexate is typically my next choice if chronic use of an oral nonsteroidal antiinflammatory agent is not stopping recurrences of uveitis. No harm in trying one or two more NSAID’s before moving on, if you wish and if you do not already have some vision loss because of the recurrences of uveitis. Voltaren, 75mg twice daily or Celebrex, 200mg twice daily are the regimens I commonly prescribe.
Hoping this helps,
Sincerely Yours,
C. Stephen Foster, M.D.
Dear Dr. Foster:
As you may or may not know, I saw an opthamologist in Edmonton for a second opinion. A Dr. D. I got the impression from him that was quite against the use of immunodulators and that they have the side effects of deformed children (even after being off the drug) and possibly death (says he saw a case where someone died). This facts were scary to me. Can you clarify more?
Also, he told me that I had no more inflammation in my right eye, but I’m still seeing flashes and floaters (had vitrectomy in right eye in June) as well as pain. The left eye, also in pain, the vision had gone from 20/25 to 20/30 and he said that I had cells “off and on”. Is this considered active inflammation and would you consider it a good reason to come to you for a consultation.
Brenda
Please find the article published in the American Journal of Ophthalmology site about the use of immunomodulatory therapy in OID to educate yourself. Regrettably many doctors, including ophthalmologists, are totally ignorant of the facts regarding this type of therapy, and in their ignorance spread incredibly incorrect and frightening information to patients who then chose not to proceed with such therapy and who then, over a period of 10-20 years slowly needlessly lose vision.
Sincerely,
C. Stephen Foster, M.D.
I found ask the Dr. Is leucovorin calcium day after MTX as affective as 1 mg folic acid QD. Or is it too effective and doesnÿt let the MTX do it’s Job.
Thanks,
Anne
Both folate supplementation regimens reduce the incidence of elevated liver enzymes in patients taking methotrexate, and both are acceptable:
Sincerely Yours,
C. Stephen Foster, M.D.
Are they related in any way. Could one have both? I am trying to figure out why I have such incredible tenderness in my temples and headaches.
Anne
Yes, but extremely rare. Additionally, temporal arteritis is generally seen in people over the age of 50, and almost always is associated with an elevated C-reactive protein and sedimentation rate. If you are concerned that you could have temporal arteritis, I urge you to raise this concern with your doctor immediately, today, and get the aforementioned laboratory tests performed. Temporal arteritis is an ophthalmic and medical emergency, with the potential for catastrophic, abrupt loss of vision without warning.
Sincerely,
C. Stephen Foster, M.D.
Hello Dr. Foster,
I have recently been switched from oral to injectible MTX. While using orally (10 mg), I was taking 2.5 mg of Leucovorin Calcium 24 hours after MTX dose. My doctor says I will not need to take this anymore, but I can if I wish.
Do you agree that stopping it is a good idea? Is it necessary?
Thanks!
Kristin
I am always loath to interfere with another doctor’s patient and instructions he or she has given to the patient. So….instead of answering you directly, may I please give to you a reference on the matter of folic acid and folinic acid use in patients taking methotrexate? You can obtain this through your local medical library or can at least read the abstract of the article through the online services of the National Library of Medicine (https://www.nlm.gov).
The reference is as follows:
van Ede, A.E., et al. Arthritis and Rheumatism, July, 2001, Vol 44, pp 1515-1524
Hope this helps in some way or other.
Sincerely Yours,
C. Stephen Foster, M.D.
Is there a difference between these two diagnoses? Is recurrent somehow different from chronic?
Thanks for the info,
Kristin
Yes, Kristin. Chronic means that the inflammation is there all the time, every day, day in and day out, to one degree or other. Recurrent means that the inflammation may be gone for a while and then recur.
C. Stephen Foster, M.D. (11/19/2001)
Hello Dr. Foster,
This is a bit of a follow up from Kristens’s question. When I turn to the treatment algorithms posted at this site, I see that there is one for recurrent non-granulatomas (sp?) uveitis, and for JRA associated uveitis – I am still not sure what pattern my son’s case would follow therefore what algorithm should be followed?
He is 13 and has been on pred-forte since June for his left eye for a 4+ inflammation, which has led to posterior synchiae. A week ago we found the inflammation was between 1/2+ and 1+ on and we now have 2+ inflammation in the right eye, and started the pred-forte in that eye. He has had the workups for JRA. SA, etc and his pediatrian and the pediatirc rheumatologist cannot find anything. Although he will be retested again in December to see if he develops any responses to these tests.
I know that this disease is rather hard to define in succinct terms, and that the treatment must be personalized in each case. My concern is that after 6 months, I see this as a chronic condition, and I am somewhat confused as what the next course of treamtent would likely be? The Non-granulatamas plan moves to short course sytemic steroids, followed by NSAIDs and then immunomodulators. However, the JRA also talks about ‘recur’ of inflammation, and I don’t think that we have reached a quiet state yet, so I think that we are not ‘recurring’ but are ‘chronic’.
After all of this long message, my underlying concern is that I cannot seem to interpret what the treatment algorithm is for chronic uveitis? Your insights are much appreciated.
Your clarification is much appreciated,
Lori
It doesn’t matter. The essential point is that your son is not at peace, with NO INFLAMMATION ON NO STEROID. Therefore, it’s time to move along. Do something. Anything. Just do something and do not continue with endless steroid drops for another 6 months. Whether the next step is a short course of systemic steroid or an oral nonsteroidal anti-inflammatory agent is patient dependent, and I cannot comment on your son’s particular case without personally evaluating him; I am loathe to practice medicine over the internet. But my view is that one wants to stay in the hunt and prevail by continuing to try one thing after another until the inflammation is in remission off all steroid.
Sincerely,
C. Stephen Foster, M.D.
Thank you Dr. Foster for such a prompt reply. I needed the clarification that regardless of the location of inflammation, the treatment goals are the same. In September he was ready to try the systemic steroids but as the inflammation was decreasing, we were to taper the left eye off the drops.
I have set my goal as not leaving the office until we are on another course of action. No inflammation, no steroids will be my mantra.
Sincerely,
Lori
Dear Dr. Foster,
Thank you for all your kind advise. It has been most helpful in considering the direction of my son’s treatment. My search of Cyclosporine in regards to the risk of malignancy seems to turn up a weak risk factor at most. It is also helpful to know that we can still increase the dose of Imuran.
I really find your site and your dedication quite incredable. I have bookmarked your links and medical associations and have dragged them to the top of my most frequently visited sites. There doesn’t seem to be enough time in a day to read it all! In my searches I do come across one question that plagues me. Although granulomatous uveitis appears to be less common than non-granulomatous uveitis; does it really make a difference in terms of drug of choice? Has anyone ever looked at that? Or is inflamation treated as inflamation independantly of its nature in regards to granulomas?
Again, thanks for being my sounding board. I am glad to see that you got away for a weekend. Hopefully you did not discuss the newest treatments for uveitis over dinner.
Kathleen
Dear Kathleen:
It does matter, both from a treatment point and from the point of liklihood of systemic disease association and type of systemic disease to investigate.
Best Wishes,
Stephen Foster, M.D.
I read an article of a study done by Susan Lightman MD at Moorfield Eye in England that I found doing a Medline search a while ago. They plotted uveitis flares and stress in one’s life and found no correlation that was statistically significant. However there is research to show that stress does effect the immune system so ……… It would be interesting to plot one’s flares w/ events in one’s life and see the results.
Glenn
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Hi Glenn,
I have reviewed the ophthalmology literature on stress and uveitis. There are seven articles; the Lightman article is a good example of the challenges of the task. From the point of view of stress research, the study is very poorly designed; the results are destined to be what she got. Like the rest of the ophthalmology literature in this area, in the end they tell us nothing of importance. The challenges of designing such a study (is stress implicated in recurrence of uveitis flaring?) are daunting and I really, really
appreciate all that have tried to do so. REALLY.
Here are some of the problems to solve:
1. What kind of stress should be measured (there are many, many ways to define stress)?
2. With what should it be measured?
3. How should the sample be stratified with regard to OID, psychological variables of importance, stress history, coping style, etc. etc. etc.
I have reviewed the stress and coping literature and have some ideas about all of this, but the practical problems of designing and implementing a feasible study, and one with potential for meaningful outcomes, remain daunting. Such studies need, for all of the obvious reasons, to be conducted in ophthalmology centers that see a substantial number of uveitis patients, so we have come full circle.
Such an interesting area. So interesting. All physicians “know” that stress is a factor in relapse (not initiation) of some illnesses. Try to find a study that “proves” that point, in any
medical field. I would love to see the references.
Turn on those search engines, gang.
Liz
Dear Glenn:
The Lightman article, in my opinion, is extremely flawed. Stress research is incredibly difficult, especially if one tries to “measure” stress longitudinally, i.e. on multiple occassions over, say, a 2 year period. This is a frustrating but favorite area of interest for me, and I have tried to interest several people over the years in attempting to do the research required to answer the question, since many, many patients and doctors are convinced that stress can provoke a flare-up of uveitis in a patient who has had uveitis. No luck. Dr. Irvin did a very extensive literature search, and had conversations with colleagues in her field (psychology) who are expert in the matter. I have tried to find laboratory resources for measurement of “proxy” markers of stress (blood tests), without success.
You’re right about stress affecting the immune system, and it’s very complex. Stress can down-regulate some aspects of immunity, increasing the susceptibility to infection, for example. But it also appears to enhance some aspects of immunity, particularly where autoimmune problems are concerned.
If you want to get involved, welcome aboard the train (so far) to nowhere.
Sincerely Yours,
Stephen Foster, M.D.
I took us more than 7 months to get a referral to Barnes (St. Louis), where we have finally been given the information we need to fight this. After some brief research early into my sons fight, but before finding Dr. Foster and this site, I feared we were being led down the path to blindness, one drop at a time. Something instinctively said “this is not right”. I am just beginning to develop the terminology needed to discuss this illness, and pretty much everyone, altho they care, they really don’t want to talk about it. And the stranger at the lettuce bin – really doesn’t have a clue either. So I was elated when I found Dr. Foster’s site and this support group. I have met very few of you, yet and already, I feel as if you have hoisted that elephant off my chest. I have had very little opportunity to vocalize my concerns or, more importantly, concur with the treatment plan Barnes ordered for my son and provide MY son with the support he needs.
He is a wonderful, compassionate teen who has struggled to keep some type of normalancy in his life. My son loves baseball. He has been the pitcher, shortstop and catcher for his team. This year, based on his performance and those of his team, they were two games away from the play offs when Bryant flared badly. He was one of two pitchers the team had…and at this age….they can only pitch a set amount of innings. The catcher was calling for the balls he wanted and Bryant could not make out what he was calling for. He never thought of quitting….wearing dark glasses, and protective gear, he pitched. It came down to playing three games on the last day with Bryant needing to pitch the championship game. He asked if the coach could put some tape around the catchers fingers….he asked for bright pink tape…thought he would be able to see that. Coach made decision not to try the tape, but told the catcher this would be a tough game for him because Bryant was just going to pitch and his job was to catch whatever he threw. The catcher rose to the task… the game went the entire 6 innings and two more in overtime. Bryant pitched a smoking 17 strike outs to the other pitchers outstanding 13 strike outs. Both teams left the field…knowing what a great game they played and knowing the extra challenge our team faced with Bryant’s illness. Bryant has said that day was the best day of his life. I have had to take back to the day many times since then. I remind him of what he said and tell him I know more are in store for him. And he is intuitive enough to know and has stated that it is odd that the best day of his life has occurred during one of the toughest times he has faced with his health. I tell him to fight….fight like he fought on that day…..hand in and do what must be done.
Cheryl
Thanks for posting your message on our site. it will be a very, very valuable lesson to hundreds of other mothers and fathers with children with uveitis. You have done EXACTLY what you should do, i.e. get into the care of a uveitis expert. Please tell us who are the other doctors involved in you son’s care: the general ophthalmologist, the “specialist”, the pediatric rheumatologist, etc. Is the high ACE being followed up now? Although methotrexate has not succeeded in controlling the problem at doses that were tolerable, remember that there are many, many other immunomodulatory agents which can accomplish the job; it’s just a matter of never giving up, staying in the hunt, trying one thing after another until you achieve THE GOAL: complete freedom from all inflammation and recurrences, OFF all steroid.
With Sincerest Best Wishes for success, and soon.
C. Stephen Foster, M.D.
Call Foundation at 781-647-1431 x407
Frances Barrett Foster, MS, NP, CS
Support Group Chair and Facilitator
Email: ffoster@mersi.com
Alison Justus, MSPM
Director of Development and Programs
Email: ajustus@oiuf.org
Click here to listen to
Uveitis and Steroid-Sparing Therapy
Presented by C. Stephen Foster, MD, FACS, FACR
Audio-Digest Ophthalmology Volume 56, Issue 15
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